Background Patient experience is increasingly being recognised as a core component of quality and service improvement, reflected in the growing emphasis on the importance of patient experience in health policy. However, measuring patient experience systematically and meaningfully and ensuring that findings result in improvement in services is challenging. Our aim was to develop and implement the systematic collection of patient/ parent experience data across a range of cardiothoracic services and to use quality improvement methodology to implement change.

Methods Plan-Do-Study-Act methodology was used to develop the patient reported experience measure (PREM) pathway. Questionnaires, comprising both quantitative and qualitative questions, were developed for each service individually in collaboration with the team and sent/given to parents. All questionnaires included the same three benchmarking questions related to being treated with dignity and respect, coordination of care and parents receiving answers to their questions that they could understand. On completion of data analysis a report was written for each clinical team and they were asked to devise a Specific-Measurable-Achievable-Realistic-Timely (SMART) action plan. Findings and the plan were reported back to parents when they were sent the questionnaire for the next cycle.

Results During the first cycle sixteen surveys were developed for different clinical services and questionnaires were sent/given to 1687 parents. The overall response rate was 30% (15%–54%), with two surveys still ongoing. Clinical teams have developed SMART plans for eight surveys and one team has reviewed and reported back on their progress against their plan. Two teams have now started on the second cycle of questionnaires. There were a number of challenges, including lack of resources (time, finances, electronic data collection tools), some individuals lacking awareness of PREMs or understanding of their value and problems with actioning the SMART plans. However, teams generally engaged very positively, recognising the importance of PREMs and actively seeking solutions to problems.

Conclusions PREMs are practical and acceptable quality improvement tools in health care but there are challenges which need to be addressed, primarily related to resources and training. Sustainability in particular needs to be addressed, given the resource intensive nature of the PREM process at a time when health services are financially constrained.